Two weeks and counting...

Well, today was another busy day. I don’t know how that happens. It appears that my calendar isn’t that full, and the next thing I know, the day is over.

We had our pulmonary appointment today. It went okay. The worst thing about it is how long it takes. We left the house before 1pm and didn’t get home until a little after 5pm. We did see my favorite nutritionist. She had not seen Harlie in a while and she said she was really happy with her weight gain. She weighs 14 pounds, 13 ounces and she is just over 26” long. I was hoping for 15 pounds, but it looks like that is right around the corner. Woohoo!!! She certainly feels heavier, which feels wonderful when you’re carrying her around.

We are going to leave her on the Portagen formula until after she fully recovers from lung surgery. And as long as she’s on Portagen, we will remain at continuous feeds, 21 hours per day. I’m pretty used to it, so it doesn’t really matter to me.

I think the pulmonologist was a little concerned. Harlie is working harder to breathe now than when he saw her at the end of May. He prescribed Pulmicort breathing treatments twice a day. I don’t know much about it, but I think it is a steroid and it is often used to treat asthma. I think he was thinking it might help with her secretions. We've tried two other breathing treatment meds, but neither has ever made a difference. I think it is just the inefficiency of her lungs, and the breathing treatments aren't the solution for that.

I am still working on her oral feedings. Really, they are called oral trials. There’s not much “feeding” going on, that’s for sure. I think I mentioned before that our goal is to show her that food tastes good and we want her to learn to anticipate a bite, opening her mouth willingly. Hopefully we’ll trigger her swallow reflex at some point. And I know it is so far fetched, but every time I put some food in, I will her to swallow it. One day she will and I will be the happiest person on the planet!

Well, tonight during her evening trial, she opened her mouth for the syringe! I was so excited! I think that is such a big step. And there were 2 bites that I didn’t see the food come back out. Now, that doesn’t necessarily mean she swallowed. She does have the ability to hold several bites in before her mouth fills up and then it all comes out. But, when some did come out, it really didn’t seem like enough for all the bites.

And I know this all sounds weird. I’m sure some of you are wondering how in the world we can’t see what’s going on in her mouth. But, Harlie has a very small opening. Because she is missing some bones on one side of her jaw, it doesn’t open straight up and down like normal. You can really tell when she yawns – it is very crooked and hardly opens. At her most open, you can barely see in there. And then if you can see, her tongue is usually rolled towards the back. In fact, for the first time, I saw her tongue today. We were suctioning out her mouth and she was feeling the suction with her tongue. So, I’m hoping we’re making some really good progress there.

Well, that’s about it for today. Two weeks from right now and her surgery will be over!!!

Take care,
Christy

Quick one.

Wanda’s memorial service was on Friday. It was a wonderful service. A lot of people got up and spoke about Wanda and shared their stories. You hear that certain people are amazing and you think, yeah, okay, sure. But, Wanda really was. And it was obvious that many people agree with me on that.

Harlie is feeling better. She had physical therapy today and it went well. I always feel better when she has a good therapy session. Tomorrow we have a pulmonary appointment and hopefully we’ll be seeing the nutritionist that was taking care of Harlie when she was in the hospital. She’s my favorite. I’m hoping we can just stick with her now. It sounds like that should be easy – but of course, it is more complicated than that. But, I think I can get around those rules considering my previous experience with the other nutritionist!

Tomorrow (July 31st) is Brandy’s birthday (our day nurse). So, Happy Birthday Brandy! You would think she would have the day off, but no. Since we have the pulmonary appointment, she said she would work so she could go with us. I told her she didn’t have to. But, she insisted – because she’s so darn good to us. I really don’t know what I’d do without her.

Oh, I have a funny Murphy story. The other night Tom and Murphy were wrestling and playing on the floor while I was getting Harlie ready for bed. Out of the blue, Murphy says to Tom, “You want a piece of me?” It was hysterical - that little tiny voice saying that. Tom and I had no idea where he learned that. Then the next day, Murphy told me that he heard it in Toy Story.

Well, that’s about it for today. I hope you are all well.

Thanks for checking in,
Christy

10 Months Old - yesterday

So, Harlie is 10 months old now. The past week has been a rough one for her. Her lungs sound so wheezy - and most times you can hear it without the stethoscope. I tried to let her fight whatever she was coming down with on her own - but she just couldn't do it. So, she's back on antibiotics again. There were a couple of times I thought I was going to have to take her to the ER. But, I know that there's nothing they are going to do there that I'm not already doing at this point. Plus, her O2 sats are good and her respirations aren't unusually high. We just have to get to the 14th. Luckily, the antibiotics appear to be making a difference, and her coughing attacks have lessened.

Because of her tracheomalacia, when she starts coughing, the area of her trachea, below the trach, collapses. So her exhale is super long and her inhale is too short. Makes for a very painful few minutes (for the both of us). But, thankfully, the meds seem to be doing the trick.

Her helmet wearing is going great. Her head is really starting to change. I know we aren't going to be able to completely correct the asymmetry, but we can certainly make it better. So, we are really pleased so far. Thanks for all your support and kind words. As always, they are very much appreciated.

Take care,
Christy

Wanda B.

I know some of you have heard me talk about my friend, Wanda Brooks. I worked with her at Mountcastle Homes and CMS. She was an incredible person who had been battling cancer for about 20 years. Sadly, on Monday night she passed away. Even though you could say it was expected, I still can’t believe it. She beat the odds so many times in the past. Despite all the adversity she had faced in her life, she had an incredible sense of humor and good spirit. She was fun loving and she would tell anyone the way it was and what she thought about it.

The last time I saw her was April 30 at the 6 year anniversary party for CMS. Harlie was in the hospital and Tom came to relieve me so I could go. No one told Wanda I was coming so it would be a surprise. I can honestly say that I have never received a greeting like the one I got from her that day. I will never forget it. She was so happy to see me and it was genuine. It made my day. And I can’t tell you how grateful I am to have that memory.

I hate and regret that I let these past 3 months go by without seeing her again. And I am so disappointed in myself. If there is one thing I thought I have learned since having Harlie, it is to not take life for granted. I never know what tomorrow will bring. That is why I take so many pictures. That’s why I have used our camcorder more in the past year than in the past 3. But, somehow, I let 3 months go by. It makes me so sad.

But, I feel grateful and lucky that I knew her. And I will fondly remember her ballsy attitude and contagious laughter always. And I will miss her. I will miss her very, very much.

We have a surgery date!!!

Yes, we have a surgery date! It is August 14th. We will find out the day before, what time it is and when we have to be there. I am assuming, due to her age, that it will be in the morning. Luckily we don’t have to do the pre-op stuff like we did before her heart surgery – so we only have to show up the day of surgery. He is thinking that it will be a recovery time of about 4 days. That would be great – but I am not holding my breath. Every single time she has had a procedure done it took her several days to get everything back in balance. But, with all I know about her veins and everything, I am going to be much more pro-active and assertive, and maybe that will help some.

The surgeon sent me a nice e-mail. On Wednesday he told me to give him 2 weeks, and I heard from him in 2 days. Pretty nice. He already got everything lined up with ENT as well. So, ENT will do a bronchoscopy, assess her trach size and see if they can fit a tube in her right ear. And Dr. Sandler will remove her lower right lobe and will remove part of her upper right lobe. Hopefully, leaving some of her upper lobe will help stabilize the middle lobe in hopes of saving it to grow.

All in all, the surgery will take 4-6 hours. I know that there are no guarantees, but I am so hopeful that this surgery will help her. After everything I have learned, it just makes sense that this is the right answer. And if not, then we can go back to her heart surgeon with more concrete info that her heart must be cause.

Well, on Friday we had physical therapy. Harlie did great. She sat up by herself for about 3 minutes! It was so wonderful to see. I took pictures. It would be GREAT if she could sit up on her own soon. It would make putting on her helmet and getting her dressed so much easier. Honestly, it would make everything so much better once she accomplishes that HUGE milestone.

On Saturday I took Harlie to the Little Gym with my friend Jennifer (Harlie’s PICU nurse) and her daughter, Kyliegh (she is just a few weeks younger than Harlie). It was bring a friend day. To give her a little more freedom, I unhooked her from her feeding tube, and her pulse ox monitor (she just had the oxygen tubing). Anyway, Harlie did okay. I had to wake her up to go so she wasn’t too thrilled about that. She certainly wasn’t as smiley as usual. But I think she enjoyed watching the other babies. We had to suction her a lot – but that’s typical in the morning. It was so nice having Jennifer’s help. The other people there were good about Harlie. No crazy staring or anything. But, to be honest, I don’t know if it would bother me anymore. I am just so darn proud of her. Everyday she amazes me more and more.

I was organizing some of our home videos and came across the tape from this past Christmas. All I could think about is how far we have all come since then. And that was only 7 months ago. Just think what the next 7 months will bring! Thank you for all your thoughts and prayers. I wish you knew how much it means to us to know that you are all in our corner.

Take care,
Christy

PS - uploaded more pics.

Surgery Consult Info.

Noon

Well, everything is going okay so far. She had an echo that took a very long time. Nothing significant was really discussed. That particular doctor agrees with Harlie's heart surgeon that the subaortic stenosis does not need to be operated on at this time. He mentioned that it appears that the VSD (which NEEDS to remain open) is narrowing slightly as well. But, again, just watch closely and hopefully we'll get to the Fontan (a year away I'm guessing) before anything needs to be done. So, that is good.

At 11:30 we had the perfusion study. That was a bust. They said they got some info, but it was difficult due to the trach. I have to run, will write more later....

9pm

Well, we are home. Overall, the trip went well. I must admit, Tom and I had our doubts that we would accomplish anything after the perfusion study. In about 20 seconds they said she didn't have congenital lobar emphysema. And you should have seen the study - it was chaos. They didn't know she had a trach, there was a lot of running around and trying to make things work with her trach mask and oxygen. They tried twice.

Basically, they put some radioactive gas in a syringe and then squirt it in the mask. As you breathe it in, they take pictures and it shows up in your lungs. The first attempt, they got one picture before the gas disappeared. The second attempt, it never even got in her lungs. I think he didn't time it with her breaths. She was probably exhaling when he put it in.

Needless to say, I just can't put a lot of stock in the results. So, then we went to meet Dr. Sandler. The waiting room was FULL and crazy. So, I stayed in the hall (luckily there was a chair out there, so that's where Harlie and I camped). Tom went in to sign in. He said there were 6 people down for seeing Dr. Sandler for 2pm appointments! UGH! So, we waited for about 2 hours. We were prepared to leave with no new information. But, to our surprise, we really liked Dr. Sandler. He didn't rush us at all and we felt like he really listened to what we had to say. I won't bore you with the details, so I'll do my best to give you a brief summary.

No one knows if this surgery will make a difference in Harlie's lung function or comfort. She is on O2, and works really hard to breathe. The theory is that this surgery could help get her off O2 and make her body work more efficiently. But, they don't know. One interesting thing - he noticed immediately that she has tracheolmalacia. I told him that I thought it has gotten worse (and I just found out about it a month ago!). He said that is how it works - it gets worse as they become more active and need more air, before it gets better. So, maybe she's "normal" for once!

Anyway, is her heart causing her issues? Is it the worsening tracheomalacia that is causing her issues? Is it her lungs causing her issues? Hmm... or a little of each?? My feeling was that we could go around in circles forever, over-analyzing each issue to death - or we could start making some changes and hope for the best. The bottom line is that the "dead" lung tissue isn't doing her any good. Odds are that if it isn't causing the problems now - it most certainly will at some point. So, why not take it out now, with the hopes that it helps? The surgery itself is no more dangerous than her heart surgeries - less even.

So, the plan is to move forward with the surgery. He said it will take him about 2 weeks to get with her heart surgeon to get his blessing. And then surgery will be in August. Oh - I forgot to mention that today's echo was not discussed with Dr. Sandler. And her cardiologist in DC was on vacation - so she needs to get back and discuss it with them. There is still one nagging issue - there is that blood vessel going from the heart to the bad lung. They need to have a plan - just in case. So, we wait till we hear from him. UGH! But, at least we sort of have a plan now.

He is going to plan it so ENT can get in there while she's under to do a more thorough examination on her trachea (and put a tube in her right ear). If she can handle it, they will upsize her to a pediatric size (she's now in neonatal size). The pediatric ones are longer and keep more of the trachea open. Hopefully that will help her, too. He said he could also take out her peg g-tube and put in a mickey button. I will have to do more thinking on that one before making my decision.

We also discussed her anoperineal fistula. The surgery that would give her a better end result has a more difficult recovery and is harder to heal. And she would need a temporary colostomy bag while she's healing. Oxygen is really important in the healing process, so he said we should give her some time to get better and see if the lung surgery helps with that. Then do it next. If we don't fit this repair in soon, it will start to cause her problems. Of course, by the time we can fit it in, it will be RSV season.

So, all in all, we really liked him. We learned a lot. And we have a plan. With any luck, the surgery will go wonderfully, and it will help her. Well, that's it. Talk to you later.

Take care,
Christy

Off to DC...

So, we are all packed and ready to go. We are planning on being on the road by 5:30am. I have been awake for a very long time. Harlie had a bad night last night needing suctioning constantly. Unfortunately, our nurse had the night off. At 1:30am I gave up and just sat in her room with the computer. I did get a nap today, so I don't feel that tired. I'm sure it is nervous energy. But, whatever works. We have our nurse tonight, so hopefully it will be a good night for us all.

I am so glad that the surgical consult is finally here! Harlie has an echo at 9am, perfusion study at 10:30 or 11:30, and we meet with Dr. Sandler at 2pm. So, it will be a busy day. Since Harlie has been feeling and sounding so bad, we packed an overnight bag, just in case. Hopefully, we'll be home Wednesday night, but I have learned that with Harlie, you have to expect the unexpected.

Well, I will update the site as soon as I can. Please keep your fingers crossed for us that whatever we learn, we can handle. Thank you, as always, for your continued support. I hope you know how much we appreciate it.

Take care,
Christy

Sick and sick.

Well, this weekend was supposed to be a fun filled weekend getaway. I was taking Murphy to see my friend Melissa and her girls in Va Beach. And, I was leaving Harlie here, with Tom. That way, we each could get some good bonding time before who knows what will happen in the next week.

We get down there, go out to dinner (Matt kept the kids - yay!) and when we get back, Murphy has a fever of 102.9. UGH! So, I had to cut the trip short, and come home. This is the second time this summer that our plans have been foiled by sickness!!! So, I come home and take the kids back to the doctor.

Oh, I forgot to mention that Harlie has gotten worse. In fact, I almost took her to the ER on Saturday, but didn't. She started to cough and you could hear the emphysema. It was terrible. I guess I just needed some time to get used to it and have some confidence that she was okay after a coughing attack. At night she needed to be suctioned every 3-5 minutes for several hours. Tom and I just slept on her floor. It has made for some very long, sleepless nights lately.

I am taking her current condition as a sign that surgery will need to be done soon. She has emphysema - and the ER isn't going to help her. She needs to have the lobes removed. Because her secretions are colored, she is back on antibiotics. Bummer.

Oh, and to finish the whole nutrionist saga...I didn't hear from her on Friday morning as promised. I called the advocate person, just to let her know. And at 4pm the nutritionist's assistant called me to tell me that she would be calling me before 5. At 4:30, she finally called. She didn't even apologize first - she got right to business. But don't worry - I didn't let her get away with that. I let her have it. One thing that has been very difficult as Harlie's mom is having to get out of my comfort zone and be a demanding, assertive person. Not exactly words that have been used to describe me. But, I am getting better and better all the time.

So, Wednesday's the big day - our lung appointment. Just have to keep myself occupied until then. And with Murphy's help (he'll be home tomorrow) I don't think I'll have a problem. haha

Well, talk to you later.
Take care,
Christy

Good weight gain!

Well, Murphy woke up in the wee hours of the morning with a fever, feeling and sounding terrible. And Harlie had a bit of a rough night. So, in the morning I called the pediatrician and they told me to come on in right then. Unfortunately, Brandy wasn’t due in until 10, so that meant just me and the kids. But, it really wasn’t that bad. I had Murphy help me by carrying the lightest of the load – her pulse ox monitor (and it’s not that light!). It was so cute to see him helping, trailing behind with the cord. (I have to admit, that it felt really good to be out with both of my kids at the same time.) And when I get there, they practically pull out the red carpet for us. I am really happy that I switched to this doctor. They help me carry all her stuff, take me into a room immediately (they don’t even make me sign in) and then I usually only have to wait 5 minutes or less for her doc. And he really seems glad to see us, and happy to help us. Wow, what a change from what we were dealing with before.

Well, luckily, no ear infections for either, so no antibiotics (whew!). Just a run of the mill virus I suppose. They weighed Harlie and I didn’t believe it. It said 14 pounds even! She was 13.10 a week ago. That’s almost an ounce per DAY! A heck of a lot better than an ounce or two per WEEK! So, we weighed her at home on our baby scale, which so far, has proven to match the doctor’s. And it did indeed say 14.0. I’m very, very happy about that. I guess that proves what a week antibiotic-free does for her. And speaking of her weight, our pediatrician gave me the name and number to the patient advocate person. So, I called her and explained what was going on. She was surprised and said she would look into it immediately. I’m sure the nutritionist didn’t like that – but oh well. (Oh, and Libby “the Enforcer” – thanks for the support, and for making me smile!)

So, the advocate person called back and said that the nutritionist told her that she did receive at least one message (yeah, whatever) and she just hasn’t had the time to sit and do the calculations or call me back. She then said that the nutritionist would do it and call me in the morning. Yeah, I’ll be here, holding my breath. If she does call, I am going to explain to her that Harlie and I have enough battles to fight as it is. She is supposed to be on our side, helping us. Not making me waste a bunch of time and energy that I don’t have trying to get that help! Ugh!

Well, for now, I will just focus on the fact that Harlie gained good weight this week. I will take that as a good sign of things to come. So, that’s it for now. As always, thank you for your support. It really does help.

Take care,
Christy

Nutritionist

Well, today (yesterday to you) we had another helmet adjustment. I think we have worked through many kinks, which is great. She said that she could already see an improvement - so I am really happy about that.

Yesterday (Tuesday) we had occupational therapy. It was the first time Allison has been here since before Harlie's 2nd heart operation. She said that Harlie did great. No negative reactions, which is great. But still a long road ahead. I was fully prepared for that, so no big surprise there. She doesn't swallow, but our goal is to show her that food in her mouth is pleasant. Teaching her to eat by mouth will take more patience than I ever thought possible.

I have hit another frustrating thing in the care of Harlie. As she grows she needs to take in more calories. As I've already shared, she is burning so many calories just breathing, she is barely keeping up. Well, every now and then I need to call the nutritionist and give her Harlie's latest weight and length so she can work her max calories. I called on Monday, and Tuesday AND Wednesday. STILL NO RETURN CALL! I can't believe it! I told the girl taking my messages that I have a child who needs every single calorie she can get and STILL no return phone call. She said she's there, so I don't understand.

I called again today and told her that Harlie will have to have lung surgery soon and we need every ounce we can get. This very nutritionist is the one that told me just a month ago that Harlie is one percentage away from beginning malnourished. Unbelievable. I will call my pediatrician tomorrow and see what he can do. I would call my favorite nutritionist, but she is on vacation this week. I tell you, summer is a hard time to get a lot accomplished. Well, that's pretty much it. Thanks for everything.

Take care,
Christy

Teeth

Well, Harlie has 3 upper teeth coming in. Two have broken through and the third is right behind. I mentioned before that we were worried that her teeth would come in gray. Well, her bottom teeth are white, so that's great. So, I think it is safe to say that all her teeth will be white. Now, they are crooked, but that was expected. You can't have half a jaw and expect your teeth to be perfect.

Today Harlie's occupational therapist is coming to work on oral feeds. I don't know if I've mentioned it or not - but Harlie does not swallow AT ALL. So, needless to say, between that and cutting teeth, she is a drool monster. Anyway, I'm not expecting much. I've recently attempted swallowing trials and they were not remotely successful. I fully expect a very long road ahead as far as that goes. But, I just tell myself that one day, she will eat by mouth. Until then, I just try to focus on all the positives that tube feeding provides. It is really great when I have to give her meds (especially when there's 5-7 of them!).

Well, I spoke with the coordinator from Children's in DC yesterday. We are all set for the 18th. We have to be there at 9am for an echo, then the profusion study at 11:30 and consultation with the surgeon at 2pm. So, it will be a long day.

Oh, last night when I was putting Harlie to bed, I picked her up and hugged her and I'm not kidding - I think she hugged me back! She put both her arms around my neck. It was so cute! She really is a very funny little baby. Well, time to run. I hope you are all well. Talk to you later!

Take care,
Christy

Another exciting decan!

This weekend Tom and I wanted to spend some quality time with Murphy. That is very difficult to do under normal circumstances. So Brandy worked on Saturday and we got to spend the day at Lake Anna with some family and friends. We had a really good day. So, on the way home I call Brandy. She tells me that they had an eventful day. Hmm….yes, she pulled out her trach, AGAIN! And for the 3rd time, it was during her nap. I am really hoping that once she goes up to the pediatric sized trach (she’s still in neonatal size) that will be harder for her to do. I believe that the cannula is longer.

Anyway, Brandy said that she could see that Harlie was waking up (we have a video monitor) so she started to go up to get her, when she heard that noise. Then she said she hauled ass. She’s so funny. Well, Brandy did a good job. Everything is good now. In my opinion, she doesn’t get paid enough!

Well, on Friday we had another appointment with the pediatrician. We had a very interesting conversation. I told him that Harlie’s cardiologist here KNOWS her and knows me. But when we go to DC to make this very important decision – and frankly – all her heart decisions – he’s not there. Other doctors who don’t know her or me are making those decisions. And I think it makes a difference. Then he said, that’s exactly why Richmond needs a full service Children’s Hospital. He said that they have been trying to get one, but the community just doesn’t know and doesn’t care. I guess until you need one, it doesn’t matter. But we put a face on why it is so important. He said that we are the only city of our size – except Waco, Texas – that doesn’t have a full service children’s hospital. We should be ashamed of ourselves. Our community, I mean.

Anyway, Harlie’s gaining about 1 to 2 ounces per week. She now weighs 13 pounds, 10 ounces. She’s finally off her antibiotics for her ear infection and c-diff. She’s had the WORST diaper rash I have ever seen. So, hopefully now that those meds are done, it will get better.

Well, that’s pretty much it. We just have to wait till the 18th. It just can’t come soon enough. I hate that it is looming ahead of us. Just another week and a half and hopefully we’ll be in a better place. As they say, knowledge is power, right? Thanks for your support.

Take care,
Christy

Mr. Walt

So, we had another helmet adjustment today. Her helmet is definitely hard work on all parties involved!!! But, hopefully, once her head shape starts to improve, it will become easier. Harlie had a good day today. She was very happy and playful. She is ticklish now, which is fun. She only vomited once, which is great. Kate (Hannah’s mom) and Kate’s mom came to visit us today. We had a really good time.

Oh, I have a funny Murphy story I thought I’d share. He takes computer class at preschool. It is once a week and the teacher is Mr. Walt. Every now and then Murphy will say or do something we haven’t seen before. So, we say, “Murphy, who taught you that?” or “who showed you that”, etc. And, very often, (like unusually often) he will answer, “Mr. Walt”. And whatever the thing is – is not computer related! So, it is a joke between Tom and I that we really want to meet this Mr. Walt. He sure does know a lot.

Well, the other night Tom was putting Murphy to bed and Murphy told Tom that his stuffed lion farted. I’m laughing just thinking about it. Tom was surprised and said, “Murphy, where’d you learn that word?” And, you guessed it, Murphy said, “Mr. Walt”. I wish you could hear the way he says Mr. Walt. It is too funny. I don’t know where he comes up with this stuff. Kids sure do make life interesting. Well, that’s it for tonight. Talk to you later!

Take care,
Christy

More lung issues

As you probably noticed, I took a few days off from my journal. I try to stay as positive as possible, but to be honest, that has proven to be very difficult these past few days. So, I didn’t feel like writing.

For the past few days I have been working on getting the surgery scheduler in DC to put Harlie on the surgery schedule so we can plan ahead. (No, the surgeon never called.) But hospital protocol is that you have to have a consultation appointment with the surgeon, and at that time, surgery is scheduled. Of course, they only do these meetings once a week typically, and the first day he’s back is July 18th. So, we are on the schedule for that day. But, I didn’t want to wait to schedule her surgery. I already feel like we are limping as it is. But, I didn’t get anywhere. So, I called her cardiologist in DC to see if she could help.

Before talking with her today, I had a lot of hope that this surgery was the key to getting Harlie better. But she told me that it isn’t that simple. Of course not. She said that it is not so clear that the surgery will work. There are risks. One risk is that after he removes the upper and lower lobes, the middle lobe could twist, causing more problems for her. Another risk is that there is a blood vessel running from her heart to the bad part of her right lung. They don’t know what’s going on there. She said that they presented Harlie’s case to an audience of doctors. One of the doctors there was a visiting doctor from CHOP (Children’s Hospital of Philadelphia). He said that based on all the information, he thinks there are too many unanswered questions. I guess the group agreed. They have no experience with Harlie’s combination of issues. So they want to do some more tests. They are working on getting all of them scheduled for the 18th. And, the surgeon needs to meet with Tom and I to explain all the issues. And together, we will make the decision on what to do.

Personally, I don’t see how we have a choice. She is at her max caloric intake, and she is working too hard to breathe. Plus, she is still vomiting on a regular basis. She is barely gaining any weight at all. Clearly, we have to do something. It has gotten so bad for her, that I can’t move her about the house. She is fine in a cooler room that has a ceiling fan, but the second you take her into the dining room or kitchen, she’s miserable. She gets too hot and starts sweating. Then she starts coughing and gagging and then she vomits.

At a doctor’s appointment, they told me that her breathing heavy is like us running a marathon. That’s what it feels like to her all the time.

So, now we wait until the 18th. Her DC cardiologist said that if we decide that the surgery is the way to go, then he will put her on the schedule for later that week or early the next week. She said that if necessary they will admit her and work her in the surgery schedule as an in-patient. I don’t really understand the logistics of all that, I am just trying to plan ahead since I have a 3 year old I have to think about as well. I have no idea how long of a stay we should expect either. Again, we’ll just have to wait till the 18th to have our questions answered.

So, that’s that in a nutshell. And it is now late, and it has been another long day, so I have to go. Have a nice 4th.